Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved
caring for a chronically ill patient. This condition is not listed in the United States' ''
Diagnostic and Statistical Manual of Mental Disorders
The ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM; latest edition: DSM-5-TR, published in March 2022) is a publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common langua ...
,'' although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the
ICD-11
The ICD-11 is the eleventh revision of the International Classification of Diseases (ICD). It replaces the ICD-10 as the global standard for recording health information and causes of death. The ICD is developed and annually updated by the World He ...
, does include the condition.
Over 1 in 5 Americans are providing care to those who are ill, aged, and/or disabled. Over 13 million caregivers provide care for their own children as well. Caregiver syndrome is acute when caring for an individual with behavioral difficulties, such as:
fecal incontinence
Fecal incontinence (FI), or in some forms encopresis, is a lack of control over defecation, leading to involuntary loss of bowel contents, both liquid stool elements and mucus, or solid feces. When this loss includes flatus (gas), it is referred ...
,
memory
Memory is the faculty of the mind by which data or information is encoded, stored, and retrieved when needed. It is the retention of information over time for the purpose of influencing future action. If past events could not be remembered, ...
issues, sleep problems,
wandering,
impulse control problems
,
executive dysfunction
In psychology and neuroscience, executive dysfunction, or executive function deficit, is a disruption to the efficacy of the executive functions, which is a group of cognitive processes that regulate, control, and manage other cognitive processes ...
, and/or
aggression
Aggression is overt or covert, often harmful, social interaction with the intention of inflicting damage or other harm upon another individual; although it can be channeled into creative and practical outlets for some. It may occur either reacti ...
. Typical symptoms of the caregiver syndrome include
fatigue
Fatigue describes a state of tiredness that does not resolve with rest or sleep. In general usage, fatigue is synonymous with extreme tiredness or exhaustion that normally follows prolonged physical or mental activity. When it does not resolve ...
,
insomnia
Insomnia, also known as sleeplessness, is a sleep disorder in which people have trouble sleeping. They may have difficulty falling asleep, or staying asleep as long as desired. Insomnia is typically followed by daytime sleepiness, low energy, ...
and stomach complaints with the most common symptom being
depression.
Signs and symptoms
Those who are providing care for a friend or family member with a long-term illness undergo what is known as
chronic stress
Chronic stress is the physiological or psychological response induced by a long-term internal or external stressor. The stressor, either physically present or recollected, will produce the same effect and trigger a chronic stress response. There is ...
. Caregiving has been shown to affect the
immune system
The immune system is a network of biological processes that protects an organism from diseases. It detects and responds to a wide variety of pathogens, from viruses to parasitic worms, as well as cancer cells and objects such as wood splinte ...
. It was found that caregivers to persons with Dementia particularly Frontal temporal patients were more depressed, and they showed lower life satisfaction than the comparison samples. The caregivers also had higher EBV antibody
titre
Titer (American English) or titre (British English) is a way of expressing concentration. Titer testing employs serial dilution to obtain approximate quantitative information from an analytical procedure that inherently only evaluates as positiv ...
s and lower percentages of
T cells
A T cell is a type of lymphocyte. T cells are one of the important white blood cells of the immune system and play a central role in the adaptive immune response. T cells can be distinguished from other lymphocytes by the presence of a T-cell re ...
and T
H cells. Caregiving has also been shown to have adverse effects on wound repair. Further, these biological vulnerabilities are also evident in younger caregivers, implying that it is not an age and caregiver stress interaction. For example, caregivers of children with developmental disabilities have been found to have lower antibody responses to vaccination compared to age and gender matched non-caregiver controls.
Further, a higher level of blood pressure has also been observed in those younger caregivers compared to a control group of parents and this particularly strong for those without social support.
Symptoms include
depression,
anxiety
Anxiety is an emotion which is characterized by an unpleasant state of inner turmoil and includes feelings of dread over anticipated events. Anxiety is different than fear in that the former is defined as the anticipation of a future threat wh ...
, and
anger
Anger, also known as wrath or rage, is an intense emotional state involving a strong uncomfortable and non-cooperative response to a perceived provocation, hurt or threat.
A person experiencing anger will often experience physical effects, su ...
. Chronic stress can create medical problems including
high blood pressure
Hypertension (HTN or HT), also known as high blood pressure (HBP), is a long-term medical condition in which the blood pressure in the arteries is persistently elevated. High blood pressure usually does not cause symptoms. Long-term high bl ...
,
diabetes
Diabetes, also known as diabetes mellitus, is a group of metabolic disorders characterized by a high blood sugar level ( hyperglycemia) over a prolonged period of time. Symptoms often include frequent urination, increased thirst and increased ap ...
, and a compromised immune system.
The impact may reduce the care-giver's
life expectancy
Life expectancy is a statistical measure of the average time an organism is expected to live, based on the year of its birth, current age, and other demographic factors like sex. The most commonly used measure is life expectancy at birth ...
.
According to a UK-based study, almost two out of three carers of people with dementia feel lonely. Most of the carers in the study were family members of friends.
Caregiver syndrome affects people at any age. For example, elderly caregivers are at a 63 percent higher risk of mortality than non-caregivers who are in the same age group. This trend may be due to elevated levels of stress hormones circulating throughout the body. These levels are similar to someone with
PTSD
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on a ...
. Because caregivers have to be so immersed in their roles, with day/night hours, they often have to neglect their own health. They are experiencing high amounts of stress along with grief since the health of their loved one is declining. Since their roles are changing from a partnership or mother/daughter, mother/son, etc. relationship to a caregiver and patient relationship, caregivers are turning to online forums such as the
Alzheimer's Association
The Alzheimer's Association was founded by Jerome H. Stone with the help of several family members in Chicago, Illinois, and incorporated on April 10, 1980, as the Alzheimer's Disease and Related Disorders Association, Inc. It is a non-profit Ame ...
for support. This role change is difficult for many people to make, causing them to experience
anger
Anger, also known as wrath or rage, is an intense emotional state involving a strong uncomfortable and non-cooperative response to a perceived provocation, hurt or threat.
A person experiencing anger will often experience physical effects, su ...
,
resentment
Resentment (also called ranklement or bitterness) is a complex, multilayered emotion that has been described as a mixture of disappointment, disgust and anger. Other psychologists consider it a mood or as a secondary emotion (including cogniti ...
, and
guilt
Guilt may refer to:
*Guilt (emotion), an emotion that occurs when a person feels that they have violated a moral standard
*Culpability, a legal term
*Guilt (law), a legal term
Music
*Guilt (album), ''Guilt'' (album), a 2009 album by Mims
*Guilt ( ...
. It is difficult to provide quality care in this state of stress.
The health of caregivers should be monitored in various ways.
There are tests for measuring the amount of stress on a caregiver.
Caregivers are at risk for adverse effects on their health, due to emotional distress. Even after caregiving has terminated, these stressors can have long-lasting effects on the caregiver's body due to these immune alterations.
Since caregiving can further erode the caregiver's own health, many studies are being done to assess the risks that a caregiver poses when they assume this job and its effects on their immune functioning, endocrine functioning, risk for depression, poor quality of sleep, long-term changes in stress responses, Cardiovascular diseases, an increased risk of infectious disease, and even death. Resentment from the patient is what may lead to the depression and distress typically seen in caregivers. This anxiety and depression can then lead back into the health of the caregiver.
The
World Health Organization
The World Health Organization (WHO) is a specialized agency of the United Nations responsible for international public health. The WHO Constitution states its main objective as "the attainment by all peoples of the highest possible level of h ...
's categorisation of health conditions, the
ICD-11
The ICD-11 is the eleventh revision of the International Classification of Diseases (ICD). It replaces the ICD-10 as the global standard for recording health information and causes of death. The ICD is developed and annually updated by the World He ...
, has a category of "QF27 Difficulty or need for assistance at home and no other household member able to render care".
Its browser and coding tool also associate this condition with the term "caregiver burnout", connecting it to
occupational burnout
According to the World Health Organization (WHO), occupational burnout is a syndrome resulting from chronic work-related stress, with symptoms characterized by "feelings of energy depletion or exhaustion; increased mental distance from one’s ...
.
Caregiver burnout
Bodies such as the United States government's
Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC) is the national public health agency of the United States. It is a United States federal agency, under the Department of Health and Human Services, and is headquartered in Atlanta, Georgi ...
, the
American Diabetes Association
The American Diabetes Association (ADA) is a United States-based nonprofit that seeks to educate the public about diabetes and to help those affected by it through funding research to manage, cure and prevent diabetes (including type 1 diabetes, ...
, and ''Diabetes Singapore''
identify and promote the phenomenon of "diabetes burnout." This relates to the self-care of people with diabetes, particularly those with type-2 diabetes. "Diabetes burnout speaks to the physical and emotional exhaustion that people with diabetes experience when they have to deal with caring for themselves on a day-to-day basis. When you have to do so many things to stay in control then it does take a toll on your emotions... Once they get frustrated, some of them give up and stop (maintaining) a healthy diet, taking their medications regularly, going for exercises and this will result in poor diabetes control."
Causes
Caregiver syndrome is caused by the overwhelming duty of caring for a disabled or chronically ill person. Caregiver stress is caused by an increased stress hormone level for an extended period of time. Caregivers also suffer the grief of a declining loved one, as causing a depressive exhaustive state, deteriorating emotional and mental health. "Double-duty caregivers" are those already working in the healthcare field who feel obligated to also care for their loved ones at home. This over-exhaustion and constant caregiving role can cause an increase in physical and mental health deterioration. It is actually being thought that a part of the stress of being a caregiver is from how they feel about the job. In other words, if a caregiver does not like or want to be a caregiver, they will inflict more stress on themselves by accepting the role. Support from the religious community is directly and negatively associated with anger.
Risks
The American Academy of Geriatric Psychiatrists reports one out of four American families provide care for a family member over the age of 50. By 2030, the U.S. Census Bureau estimates a population of 71 million Americans over 65.
In the U.K., over 450,000 dementia patients are cared for at home. Nevertheless, over half of the caregivers (52.6%) indicated that they had some desire to institutionalize their relatives with dementia.
The
American Academy of Family Physicians
The American Academy of Family Physicians (AAFP) was founded in 1947 to promote and maintain high-quality standards for family medicine, an offshoot of the classical general practitioner. It is headquartered in Leawood, Kansas.
AAFP is one of ...
and the National Center on Caregiving both believe all caregivers should be screened for stress and depression and recommend providing caregivers with their own resources to help them cope.
Since family and more often one member most assumes the primary caregiver role, these strains fall upon them. Care for those who are chronically ill is irregular, so there are not many facilities that can provide adequate care. This caregiving role is more commonly assumed by women than men. Since there are some illnesses that create a more intense need for caregiving, the caregiver is responsible for almost every aspect in the patient's life. One of the positive aspects of caregiving for a loved one is that it can improve their quality of life, but when the caregiver is depleted of confidence, the recovery may be fostered.
Parents of children with CHD experience
psychological distress
Mental distress or psychological distress encompasses the symptoms and experiences of a person's internal life that are commonly held to be troubling, confusing or out of the ordinary. Mental distress can potentially lead to a change of behavior, a ...
such as high levels of caregiver stress,
anxiety
Anxiety is an emotion which is characterized by an unpleasant state of inner turmoil and includes feelings of dread over anticipated events. Anxiety is different than fear in that the former is defined as the anticipation of a future threat wh ...
and
depression.
Caregiving for military service members who have experienced a
traumatic brain injury
A traumatic brain injury (TBI), also known as an intracranial injury, is an injury to the brain caused by an external force. TBI can be classified based on severity (ranging from mild traumatic brain injury TBI/concussionto severe traumatic b ...
or
PTSD
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on a ...
can be very challenging as well. On April 21, 2010, the U.S. Congress passed what is known as the "
Caregivers and Veterans Omnibus Health Services Act of 2010 The Caregivers and Veterans Omnibus Health Services Act of 2010 () was signed into law by President Barack Obama
Barack Hussein Obama II ( ; born August 4, 1961) is an American politician who served as the 44th president of the United Sta ...
". This act recognizes the importance of caregivers who are caring for Veterans, and established a program of assistance for them with benefits including covering counseling and mental health services under the benefits of
Department of Veterans Affairs
The United States Department of Veterans Affairs (VA) is a Cabinet-level executive branch department of the federal government charged with providing life-long healthcare services to eligible military veterans at the 170 VA medical centers an ...
.
Issues in health care
Since this term, "Caregiver syndrome" is widely used among physicians, but is not mentioned in the ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM) or in medical literature, physicians are not always sure how to approach the issues that arise with this syndrome. Therefore, this is not addressed frequently. In a survey given by the American Academy of Family Physicians, they found that fewer than 50 percent of caregivers were asked by their doctors whether or not they were experiencing caregiver stress. If this were listed in the DSM with an official diagnosis, it could possibly stigmatize those who have it. Many believe it would be beneficial for this to receive a clinical name though, so caregivers would be able to receive the appropriate resources they need. This would encourage health care professionals to develop better strategies for treatment of Caregiver Syndrome, as well as requiring health insurance agencies to pay for appropriate treatment. Some ways to improve this syndrome have been agreed upon by experts and include the following suggestions:
*Expanding the support system for the caregiver
*Finding help in various sources for caregiver tasks
*Educating caregivers
*Paying caregivers salaries competitive with those paid to professional healthcare providers doing similar tasks, thus allowing them to retire from salaried jobs for companies where management is willfully ignorant of or unsympathetic to their workers' family caregiving burdens
*Encouraging the growth of telecommuting jobs that enable caregivers to work at home while caring for their patients
*Providing full medical benefits for caregivers and their patients
*Providing nursing and medical advice when needed, including home visits
*Providing respite services on demand
*Providing psychological counseling or psychiatric intervention for stress management
*Collecting data documenting savings for the national healthcare system made possible by home caregivers
Although previous studies indicate a negative association between caregivers' anger and health, the potential mechanisms linking this relationship are not yet fully understood.
Prevention
Effective
coping strategies
Coping refers to conscious strategies used to reduce unpleasant emotions. Coping strategies can be cognitions or behaviours and can be individual or social.
Theories of coping
Hundreds of coping strategies have been proposed in an attempt to ...
such as sleep, exercise and relaxation can help prevent stress. Caregivers fare better when they have active coping skills, such as these coping interventions:
*
Mindfulness-based stress reduction
Mindfulness-based stress reduction (MBSR) is an eight-week evidence-based program that offers secular, intensive mindfulness training to assist people with stress, anxiety, depression and pain. Developed at the University of Massachusetts Medica ...
*
Writing therapy
Writing therapy is a form of expressive therapy that uses the act of writing and processing the written word as therapy. Writing therapy posits that writing one's feelings gradually eases feelings of emotional trauma. Writing therapeutically can t ...
* Coping effectiveness training
*
Stress management
Stress management is a wide spectrum of techniques and psychotherapies aimed at controlling a person's level of stress, especially chronic stress, usually for the purpose of and for the motive of improving everyday functioning. Stress produces num ...
* Relaxation training
*
Assistive Technology
Assistive technology (AT) is a term for assistive, adaptive, and rehabilitative devices for people with disabilities and the elderly. Disabled people often have difficulty performing activities of daily living (ADLs) independently, or even with ...
Nearly 15 million Americans provide care that is unpaid to a person living with Dementia. Alzheimer's disease is the most commonly diagnosed type but research says that caring for a person with Frontal Temporal Dementia is more burdensome on carers https://www.ncbi.nlm.nih.gov/m/pubmed/19155621/
Early onset Dementia has even greater difficulties for carers. In many cases carers are overburdened and not supported and their health suffers. In order to maintain their own well-being, caregivers need to focus on their own needs. They need to take time for their own health, and get the appropriate support that they need such as respite from their care-giving duties. Through training, caregivers can learn how to handle the behaviors that are challenging them, and improve their own communication skills. The most important thing the caregiver can do is keep the person with Alzheimer's safe. Research has shown that caregivers experience lower stress and better health when they learn skills through this caregiving training and participate in support groups. Participating in these groups allows caregivers to care for their family members longer in their homes.
Support
A 2014 Cochrane review found that telephone counseling can reduce symptoms of depression for caregivers and address other important caregiver needs.
Services that may be helpful to caregivers include:
* health services in the home
* companion or chore services
* day care centers for adults
* respite care, time out at nursing homes, or assisted living facilities
* counseling
* legal advice
* money management
* support groups
*psychotherapeutic programs
* educational programs
Remotely delivered information for caregivers
A 2021 Cochrane review found that remotely delivered interventions including support, training and information may reduce the burden for the informal caregiver and improve their depressive symptoms. However, there is no certain evidence that they improve health-related quality of life. The findings are based on moderate certainty evidence from 26 studies.
REACH Program
The Resources for Enhancing Alzheimer's Caregiver Health (REACH) Project was created in 1995. This project was designed to enhance family caregiving for those who were taking care of relatives that have Alzheimer's disease and other related dementia (ADRD). This program includes:
* Support groups
* Behavioral skills training programs
* Family-based systems interventions
This program was designed specifically for people who are caring for a loved one with Alzheimer's Disease or Dementia at home, and makes it possible for those with dementia to live in the own homes longer by addressing these problems of caregiver health that force the caregiver to move their loved ones to assisted-living facilities. If they can manage the challenges that come along with caregiving better, both will benefit from this. Special one-on-one training is provided for the caregiver, as well as counseling. This allows them to be more effective in their caregiving roles. They receive help directly from dementia care specialists who work with the client on an individual basis to find solutions to problems such as:
* Caregiver stress
* Challenging behaviors
* Home safety
* Depression
* Self care
* Social support
Benefits of caregiving
Caregiving can actually provide a health advantage as well for some caregivers. Caregivers maintained higher physical performance when compared to non-caregivers. They declined less in tasks than the low-intensity caregivers and non-caregivers such as: walking pace, grip strength, and the speed with which they could rise from a chair. Caregivers also did significantly better on memory tasks than did non-caregivers over a 2-year time frame. Caregivers scored at the level of someone 10 years younger than them, although both groups (caregivers vs. non-caregivers) were both in their eighties.
While this role brings with it high costs, high rewards are also there too. This is known as "Caregiver gain". These rewards are emotional, psychological, and spiritual such as:
* Growing confidence in one's ability
* Feelings of personal satisfaction
* Increased family closeness
Women who become caregivers are healthy enough to take on the task, therefore it makes sense that they would be stronger than their non-caregiver counterparts, and remain stronger than them. The demands of caregiving cause caregivers to move around a lot, and stay on their feet. Therefore, exercise can improve both physical health and
cognition
Cognition refers to "the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses". It encompasses all aspects of intellectual functions and processes such as: perception, attention, thought, ...
. The complex thought as required by caregiving can ward off cognitive decline. This includes activities such as:
* Monitoring medications
* Scheduling
* Financial responsibilities
Other benefits mentioned by caregivers are that it gives their life meaning, and produces pride in their success as a caregiver. They are also able to give back to someone else. It has also been noted that psychological
benefit finding can be an important way of dealing with stress. The Perceived Benefits of Caregiving scale includes 11 items with questions such as, "Has caregiving given more meaning to your life?" and "Has caregiving made you feel important?" There was an alpha coefficient of 0.7 for this scale. These benefits of caregiving have been found to be associated with improved caregiver adaptation to those who are caring for someone with dementia, end of life caregiving, and bereavement. A study done with dementia caregivers showed that finding the benefits in caregiving predicted a better response to a caregiver intervention over a time period of 12 months.
See also
*
Compassion fatigue
Compassion fatigue is a condition characterized by emotional and physical exhaustion leading to a diminished ability to empathize or feel compassion for others, often described as the negative cost of caring. It is sometimes referred to as seconda ...
*
Occupational burnout
According to the World Health Organization (WHO), occupational burnout is a syndrome resulting from chronic work-related stress, with symptoms characterized by "feelings of energy depletion or exhaustion; increased mental distance from one’s ...
References
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Caregiving
Psychological stress